Memorandum submitted by the Royal College
of Paediatrics and Child Health (AL 2)
INTRODUCTION
This document has been produced on behalf of
The Royal College of Paediatrics and Child Health, which aims
to raise the standards of medical care provided to children in
the United Kingdom.
SUMMARY
1. Availability of allergy services
(a) Patients have difficulty obtaining help
and information from the medical profession about their children's
allergies.
(b) GP's feel that NHS allergy services
are of poor quality and poor provision of specialist services
is a major problem.
(c) Hospital provision of paediatric allergy
services is haphazard. There are very few hospitals offering a
full range of paediatric allergy services and in large areas of
the UK there are no specialist paediatric allergy services. There
is therefore an inadequate skill base to support development of
paediatric allergy services in primary care.
2. Priorities for improving services
(a) A hub and spoke network with paediatric
allergists supporting GP's, general paediatricians and organ based
specialists based in local hospitals needs to be developed.
(b) GP's with a special interest in allergy
need to be created in primary care. They need to have access to
diagnostic laboratories.
(c) General paediatricians with an interest
in allergy need to be created in teaching hospitals and district
general hospitals to deal with local needs.
(d) Regional allergy centres need to be
created to manage more complex cases. These will need to be staffed
by consultants in paediatric allergy, paediatric allergy nurse
specialists and paediatric dieticians. They will need to have
adequate day case, outpatient and laboratory facilities.
(e) The Royal College of Paediatrics and
Child Health has a training programme for consultants in paediatric
allergy, however additional paediatric allergy training posts
are needed to support this.
3. Governance and regulation of independent
sector providers
Paediatricians who are members of the Royal
College of Paediatrics and Child Health participate in the Continuing
Professional Development Programme of the Royal College of Paediatrics
and Child Health. A lot of allergy advice is provided by unregulated
individuals and organisations.
1(a) Availability of allergy services
Allergy charities frequently encounter deep
anxiety among families affected by allergies. Lack of information
is usually the cause of this distress. Patients commonly report
that they have been unable to obtain adequate help and information
from the medical profession. Patients with allergies say they
need to be taken seriously by primary healthcare professionals,
require investigation of potential triggers and education about
allergen avoidance and treatment options, appropriate management
and an integrated healthcare service. They need convenient access
to a service appropriate to their needs with adequate staffing
and resource to meet the need, education of primary healthcare
professionals in allergy, simple diagnostic tools (eg skin prick
testing) and appropriate management, patient education in allergen
avoidance and the use of inhaler devices, secondary care centres
with facilities for specialised testing and tertiary support in
regional centres with adequate staffing by allergy specialists.
More than 80% of GP's thought NHS allergy services were of poor
quality with poor provision of specialist referral possibilities
being the major problem.
The majority of care for children with allergies
is provided by general paediatricians or fragmented care provided
by organ based specialists (paediatric gastroenterologists, respiratory
paediatricians), ENT surgeons and dermatologists with no allergy
training. This leads to inappropriate care, bizarre and poor practice.
Whilst these specialists have an important role in the management
of allergic disorders, a partnership needs to be developed with
specialists in paediatric allergy. Additionally, a large number
of children are seen in adult allergy clinics, contravening the
National Service Framework for Children. Many allergy cases are
dealt with by their GP's, who have no clinical training in allergy.
In regions with a non-existent services (much of the UK) allergy
lacks a voice. Allergy is often confused with immunology and not
understood by Primary Care Trust's (PCT's) or regional commissioners.
(b) Availability of specialist services for
patients with severe allergies
There is currently a severe lack of trained
paediatric allergy specialists in the UK. There are only four
centres offering a full range of paediatric allergy services;
St Mary's Hospital and Kings College Hospital in London, Southampton
and Leicester. There are no paediatric allergy clinics in Scotland,
Wales or Northern Ireland. This contrasts poorly with countries
such as Sweden, who have 96 trained paediatric allergy specialists.
The increase in serious allergic disease has driven the demand
for specialist services resulting in long waiting lists for paediatric
allergy appointments. The number of paediatric allergy specialists
is totally insufficient to meet the need and there is only one
trainee in paediatric allergy. There is therefore no skill base
to support paediatric allergy management in primary care. Current
provision fails to meet standards of clinical governance and the
lack of care leads to morbidity, mortality and subsequent cost
to the NHS, most of which is avoidable.
2. Priorities for improving services
Allergy needs a "whole system" approach
in which it is treated as a condition in its own right rather
than as a series of diseases depending on the organ system involved.
Most patients with simple allergic disease will be dealt with
in general practice. It is envisaged that allergy services will
progressively become primary care led, with expertise from the
hospital setting for more severe and complex problems. A more
effective partnership is required between allergy specialists
and primary care who will need to provide the bulk of the day
to day support for children with allergy. A hub and spoke network
with allergists supporting GP's, general paediatricians and organ
based specialists based in local hospitals needs to be developed.
At PCT level, children with allergies could
be managed by a team comprising the general practitioner, practice
nurse, the practice lead in allergy and GP's with a special interest
in allergy offering allergy diagnosis and testing, symptom management
and referral to specialist services where appropriate.
General paediatricians with an interest in allergy
need to be created in teaching hospitals and district general
hospitals to deal with local needs. One model may be for a shared
appointment between trusts and a regional allergy centre (examples
already exist in Ashford, Kent and Hillingdon). A designated community
paediatrician needs to be identified within each primary care
trust to co-ordinate the management of children at schools and
in nurseries at risk of severe allergic reactions. General paediatricians
will continue to contribute to allergy care and to have primary
responsibility for patients with single organ or uncomplicated
allergic disease. Networking with specialist centres should improve
allergy services.
"Allergy; the unmet need"[1]
proposes the development of regional allergy centres to manage
more complex cases, offering equality of access to paediatric
allergy services throughout the country. Each of the eight NHS
regions in England as well as Scotland, Wales and N Ireland should
have an absolute minimum of one regional specialist allergy centre
staffed with two consultants in paediatric allergy supported by
paediatric nurse specialists and paediatric dieticians with facilities
for training SpR's in paediatric allergy and general paediatricians
with an interest in allergy. Regional allergy centres will provide
specialist expertise for managing difficult allergic disease throughout
their region (tertiary care), care for allergic disease in the
local population which cannot be dealt with in general practice
(secondary care), act as an educational resource for the region,
network with and enable local training in allergy for general
paediatricians, support training at local level for general practitioners
and nurses in the management of common allergies in primary care
and to be supported by appropriate laboratory resources for in
vitro allergy testing.
Given the scale of the national allergy epidemic,
primary care must ultimately provide the front line care for allergy,
but considerable development is needed. Given the current lack
of training and knowledge in primary care, allergy services will
initially need to be led by paediatric allergy specialists working
in hospitals. More consultant posts in paediatric allergy and
funded training posts are required. The Royal College of Paediatrics
and Child Health has recently drawn up a dedicated training programme
in paediatric allergy, in line with the European Board of Paediatrics
Training Syllabus in Paediatric Allergology. Specialists in paediatric
allergy, working in regional allergy centres, are needed to achieve
and maintain appropriate standards of care. There is a need for
facilities for accurate diagnosis and management of paediatric
allergies, day case facilities for challenge testing and allergen
immunotherapy in appropriate settings. New and expensive ways
of treating common conditions, such as the use of anti-IgE to
treat food allergy, will need careful assessment and supervision.
Clinical leadership must initially come from specialist centres,
taking on the dual role of diagnosis and management of the most
complex cases and supporting the development of capacity within
primary care. More consultant posts and training posts in paediatric
allergy are needed to generate a core leadership for a national
training and clinical development initiative for the whole service.
The creation of these posts and their appropriate service development
context requires recognition for them by primary care trusts and
trust managers.
The devolution of financing and purchasing of
services to primary care trusts means that it is difficult to
set up new initiatives because of fierce competition for resources
with established specialities. Those responsible for regional
commissioning should recognise the necessity for specialist paediatric
allergy services.
3. Governance and regulation of independent
sector providers
A very small number of doctors working in the
independent sector have received training in paediatric allergy
and are members of professional organisations such as the British
Society for Allergy and clinical Immunology, through which they
can maintain continuing professional development. This is policed
by the Royal College of Paediatrics and Child Health. These are
mostly general paediatricians who run allergy clinics. In addition
there are a large number of unregulated individuals and organisations
who operate "alternative allergy" testing and advice
which is more easily accessed by the general public. Because of
long waiting times for hospital appointments and lack of awareness
of allergy in primary care, patients often resort to alternative
allergy testing prior to being seen in a NHS clinic.
Susan Leech
May 2004
1 Allergy-The Unmet need : A blueprint for better
patient care. Royal College of Physicians 2003. Back
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